Article
Assisted dying
Death & life
4 min read

Behind the data: the social messages physician assisted suicide sends to the autistic

If intense suffering caused by society drives autistic people to seek assisted death, then society has failed.
A hand rest gently on another outstretched hand.
Alexander Grey on Unsplash.

Statistically speaking, autistic people are far more likely to die by suicide than non-autistic people. They are also, statistically speaking, far more likely to die by physician assisted suicide than non-autistic people, in countries where this is allowed.  

For example, in a study of 927 people who sought physician assisted suicide in the Netherlands (where this is legal) 39 of them were autistic. That’s about four per cent, but the prevalence of diagnosed autism in the Netherlands is only one to two per cent. The researchers go on to note that 21 per cent of these 39 people cite autism or intellectual disability as the “sole cause of suffering” that had prompted them to request assistance to die.  

I don’t like speaking statistically. For a start, 21 per cent of 39 people is 8.19 people, which raises obvious questions. A little digging reveals that what the researchers mean really is eight people. Eight people with eight unique stories that include an account of autistic suffering so intense that they asked for help to end their lives.  

But we do not have those stories, not really. Included in the report are carefully anonymised excerpts from the physicians’ notes, and this is the nearest that we can get.  

‘The patient suffered from his inability to participate in society [ … ] [He] was not able to live among people, because he was easily overstimulated. This made him isolated’ (2019 (22), male, 70s, ASD) 

‘The patient had felt unhappy since childhood and was persistently bullied because he was just a bit different from others [ … ] [He] longed for social contacts but was unable to connect with others. This reinforced his sense of loneliness. The consequences of his autism were unbearable for him [ … ] The prospect of having to live on in this way for years was an abomination to him and he could not bear it’ (2021 (26), male, 20s, ASD) 

The debate about legalising physician assisted suicide in the UK is ongoing, and the British Medical Association have provided a helpful guidance document which sets out the main arguments, both for and against, without making a recommendation either way. In the document, they observe that the reasons people ask for assisted suicide are predominantly personal and social, not clinical, and also that “laws send social messages.” I agree that laws do that, and I also think that those seeking assisted suicide send social messages too.  

For example, even just from these two tiny excerpts, I hear that a life worth living is one where people can participate in society and have social contacts, even if they are a “just a bit different from others.” It would be good to hear more. It would be good to sit down over a cup of coffee with each of these two men and ask them all my questions about their lived wisdom when it comes to autism.  

I could ask “2019 (22), male, 70s, ASD”: 

What causes the overstimulation - are there places where you don’t feel that?  

Can we create more such places for autistic people to socialise?  

And I could ask “2021 (26), male, 20s, ASD”:  

What makes you feel different?  

What kind of social contacts and connections do you think that you are looking for?  

But of course, I can’t do that, because these two men have been assisted to die.   

The word ‘welcome’ is striking to me here. What does it mean to welcome someone, not to merely include or tolerate, but to really welcome someone. 

When approached for comment, autistic theologian Claire Williams said:  

‘There is something of a personal and social tragedy reflected in these cases. If we understand that much of the difficulty that autistic people suffer is caused by society – as per the neurodiversity paradigm – then it is the case that these two nameless men were failed by society. They felt that their lives could not find a place in an unwelcoming world. It is, of course, their choice to end their lives but I do also think that God chose to start their lives and finds them to be infinitely valuable. They were both made in God’s image and reflect something of it. That they felt there isn’t a place for them that is suitable is a tragedy because society should do better to welcome them.’ 

The word ‘welcome’ is striking to me here. What does it mean to welcome someone, not to merely include or tolerate, but to really welcome someone, even if they seem ‘a little bit different from others’? Dr Léon van Ommen, another theologian who writes about autism, suggests that it is a matter of making oneself and one’s resources fully available to that person, to the point where they feel that you belong to them. This is not to promote relationships with unhealthy power dynamics, but to highlight that when a person feels truly welcomed by another, they feel the opposite of owing a debt or being a burden – they feel they are of value, that you would be lacking something without them.  

I feel we are lacking something without you, “2019 (22), male, 70s, ASD”. And I feel we are lacking something without you, “2021 (26), male, 20s, ASD”. Not to forget the 37 others who are a little like you. We can pause to reflect on the social messages that you have sent, what you are teaching all of us about what it means to live a “good” life. But I am sorry that you have all died now and we cannot hear more.   

Whether people in the UK should be able to choose physician assisted suicide, I, personally, am not yet sure. Like the BMA, I see and respect the very good arguments both for and against. But eight people have chosen physician assisted suicide due to autism or intellectual disability, and when it comes to the social messages that sends, I feel compelled to sit down and listen.  

Review
Culture
Film & TV
Trauma
Work
4 min read

Severance: the ins and outs of seeking oblivion

We can't contain trauma to just one sphere of our lives.

Josh is a curate in London, and is completing a PhD in theology.

In a retro-future styled office, workers stand or sit around a pod of desks.
Apple TV.

How far would you go to stop yourself doing late-night emails? Or what would you be willing to do to escape those painful memories? Severance, returning for its second season on AppleTV+, explores an extreme solution to both. 

The show follows a group of office workers at Lumon who have had their memories severed: when outside of work they do not remember what they do at work and when at work they do not know anything about their lives outside. The work-self, referred to as an 'innie', enters the elevator at 5pm and immediately finds themselves back in the elevator at 9am the next day. They feel rested without any memory of the rest. Their "outie" blinks at 9am and then it is 5pm.  

Adam Scott's protagonist, Mark, joined Lumon Industries as a severed employee working in "Macrodata Refinement" (MDR) as a result of losing his wife. In an episode early in the second season, one character recounts Mark telling them that he applied for the role because it felt like he was "choking on her ghost." Being severed offers Mark hours each working day where a version of him can work oblivious to this grief. 

Of course, Mark's employer is up to something sinister, though exactly what remains unclear even to the innies. Lumon is at times terrifying, at times goofy and always unsettling. Innies are mistreated but cannot communicate with their outie beyond what Lumon allows. Even in these conditions, the small MDR team, each with no more than a couple of years' worth of memories, find purpose in their relationships with one another and in seeking to understand their bosses' designs.  

Severance has attracted a lot of attention and reflection. Writing for the Financial Times, Emma Jacobs concludes that the show points us to our impossible longing for a boundaried life. The Northeastern University academic Tomas Elliot proposes that Severance can be read as an inversion of The Matrix: employees knowingly placing themselves in a state of naivety. Jacobs and Elliot both read the show as pointing to the paradoxical nature of modern work as both the cause of discontentment and the place many look to for a sense of purpose and fulfilment.  

Instability cannot be contained to one sphere of life. Life is hard and so is work. Neither can offer escape from the other. 

At the heart of many of the questions that Severance raises is the relationship between work and identity. Most of us live with a sense that who we are is found in our relationships. Work means something because it is one of the places we are most powerfully shaped by and shape relationships with colleagues, competitors, consumers and everyone else. Work becomes destructive when it cultivates destructive relationships in the workplace or when it displaces other forms of community and sources of identity.  

The process of severance  protects outies from the formative power of workplace relationships: their strains and their joys. No doubt we could each imagine benefits to this. However, it leaves Mark's outie paralysed by grief because he has denied himself a key source of relationships through which he could begin to heal, integrating that grief into a new sense of self. 

Just as Mark's innie is protected by the outie's grief, the outie is protected from discovering who he could be without his wife. As the series progresses, it becomes less clear whether Mark's motivation is the fear of grief's crushing burden or the fear that one day the burden may ease.  

In his book Resonance, Hartmut Rosa writes: 

Time and again, human beings come to discover that they can become "different people" in different contexts. And under the highly dynamic conditions of late modernity, the task of finding out who we really are collides… with repeatedly having to "reinvent" and creatively redefine ourselves. That said reinvention also should be "completely authentic" is surely one of the more pointed paradoxes of the present age.  

As Rosa notes, the dynamism of contemporary market forces produces a dynamism in our sense of identity, which can be experienced as instability. One response to this instability—and all the other humiliations and challenges of living at this time—is to look for ways of separating "work" and "life", to carve out a space where I can be free from constant performance and reinvention. And yet, as Severance shows us, whatever part of ourselves we designate as "life" or "outie", it cannot be free from pain and sometimes we will escape to, rather than from, "work".  

Instability cannot be contained to one sphere of life. Life is hard and so is work. Neither can offer escape from the other. Some things must be resisted and some must simply be lived with. Both can only be done together. Ultimately, both can only be done if we are held in and defined by a relationship secure through any failure or loss. Seeking such a relationship is a life's work, for both innies and outies.  

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